Open Society

Attempts to subgroup autistic people have been largely unsuccessful and generally unwelcomed by autistic people who can communicate a preference. Parent and author Amy Lutz and her colleagues contend that “studies focusing on those most disabled by autism … should be of paramount concern to everyone in the autism community.” I agree, and I contend that they already are. Despite the underrepresentation in research, and indeed the challenges of including those with higher support needs in research, I contend that autistic people with the greatest challenges and support needs benefit from autistic-led research, when those caring for them are open to autistic community wisdom and scholarship.

plitting the autistic community in two based on level of disability or support needs is a false dichotomy. If you are not autistic, it may seem inimical to suggest that autistic people should not be considered as two separate groups, but those of us who live this reality know that we have far more in common across the spectrum than our differences might suggest. This is not to deny the wide range of challenges and support needs, but clinicians, researchers and caregivers who listen to autistic people describe similar issues stand to gain a far deeper understanding of them. Attempting to split us up and using those differences against us in an attempt to deny the needs of some — thus weaponizing our heterogeneity — only harms those in greatest need. For researchers and caregivers whose goal is prevention and cure, this insight is unlikely to change their perspective, but increasing numbers of clinicians and researchers are appreciating the value of a neurodiversity-affirmative approach to autism. The way in which autism is framed will have a profound effect on individual outcomes, and there is a profound need to deliver effective supports for all autistic people, regardless of phenotype. In my view, these are the only two contexts in which the word “profound” should be used in relation to autism or autistic people. Focusing on our shared experiences of the world, I believe, will bring us closer, and more quickly, to our shared goal of healthier, happier lives for all autistic people and their families.

Activities offer a variety of options, enabling students to make choices about how to carry out activities according to their abilities, needs, and interests. Offering choices and using flexible tasks adapted to the needs of neurodivergent students can reduce frustration, improve autonomy, and facilitate new learning (Gunn & Delafield-Butt, Citation2016; Lindsay et al., Citation2014; Meindl et al., Citation2020; Reutebuch et al., Citation2015; Stokes et al., Citation2017; Watling & Spitzer, Citation2018). This is also in line with the recommendations to offer various means of engagement, representation, expression, and action in the universal design of learning, in order to reach a broader range of learners (CAST, Citation2018). Thus, it is possible to offer choices regarding the equipment or technological tools to be used for an activity, such as electronic tablets, interactive whiteboards, a cell phone, or a computer (Becker et al., Citation2016; Carrington et al., Citation2020; M. Clark et al., Citation2020; Grynszpan et al., Citation2014; Hodges et al., Citation2020; Hughes et al., Citation2019; Martin, Citation2016; Oliver-Kerrigan et al., Citation2021; Sansosti et al., Citation2015; Stokes et al., Citation2017). Flexibility can also be offered in terms of the assessments to be carried out (e.g., demonstrating their learning orally or in writing), deadlines, or the allotted time offered to complete an activity (Becker et al., Citation2016; Grynszpan et al., Citation2014; Hughes et al., Citation2019; C. S. Martin, Citation2016; Oliver-Kerrigan et al., Citation2021; Sansosti et al., Citation2015; Stokes et al., Citation2017). This flexibility can help provide the just-right challenge to all students, so that activities are not too easy, nor too difficult.

Students’ passions and strengths are integrated into various school activities, such as classroom themes, teaching, games, or visual supports. The harnessing of passions and strengths fosters the participation of autistic students, notably by contributing to engagement in academic activities, initiative-taking, autonomy, positive interactions with peers, the development of self-esteem, and the construction of a positive identity (Bolourian et al., Citation2021; Carrington et al., Citation2020; Gunn & Delafield-Butt, Citation2016; Hodges et al., Citation2020; Koegel et al., Citation2012; Kryzak et al., Citation2013; Lindsay et al., Citation2014; Oliver-Kerrigan et al., Citation2021; Stokes et al., Citation2017; Watling & Spitzer, Citation2018; Wood, Citation2021). School staff will therefore take the time to get to know students’ passions and strengths in order to offer them multiple and varied opportunities to participate in activities that connect with these. Passions can be integrated into themes for class work, in the choice of responsibilities, or in the offer of extracurricular activities. Neurodivergent students can also be encouraged to help their peers in areas where they have strengths and be offered opportunities to share their passions with others.

School activities include stimulating or restorative activities such as physical activities and rest periods to allow students to recharge their batteries and be more available for other activities. These activities can be incorporated at different times, depending on students’ needs, including within learning activities, at the beginning or end of the day, during recess, or at lunchtime. The provision of stimulating and restorative activities contributes to the well-being, task engagement, and academic learning of autistic students (Carrington et al., Citation2020; Ferreira et al., Citation2019; Hartley et al., Citation2019; Katz et al., Citation2020; Koenig et al., Citation2012; Lang et al., Citation2010; Nicholson et al., Citation2011; Oliver-Kerrigan et al., Citation2021; Oriel et al., Citation2011; Petrus et al., Citation2008; Sowa & Meulenbroek, Citation2012; Stokes et al., Citation2017; Tanner et al., Citation2015; Warren et al., Citation2021; Watling & Spitzer, Citation2018). Different activities can be offered, such as short sessions of intense physical activity in the classroom, mindfulness activities, stationary cycling, yoga postures, or by making favorite materials available. Flexibility is key to respecting each individual’s unique needs in terms of when, where, and how to self-regulate. For example, at recess, some students might benefit from the option of doing nothing or pursuing their interests alone to enable them to be more available for learning later on.

The importance of the social environment in the proposed model is also consistent with the double empathy theory concerning the lack of mutual understanding between so-called neurotypical and neurodivergent people (Milton, Citation2012). Those involved in the school should therefore try to better understand the perspectives of others, and value different ways of thinking, being or doing.

Our results also show that it is important for the physical environment to be free from excessive stimuli, to provide appropriate visual support and clearly defined spaces. In addition, our results suggest that school activities should harness strengths and passions, offer diverse options, be predictable and structured, and include both stimulating and restorative activities.

The authors recognize, however, that there is no single solution that suits all school contexts and all students, given their varied needs and strengths. Thus, the features of activities and environments do not prescribe or impose a particular action, but rather support the analysis and choice of strategies consistent with the unique needs of school teams, students, and families. This flexibility is conducive to transformations in school practices, as it enables adaptation to each environment for greater consistency with its culture, needs, and practices (Desimone, Citation2009).

Flexibility makes a big difference in inclusion.

Many disabled workers become self-employed because it’s so difficult to find employers who are willing to accommodate remote work, flexible schedules, and other needs someone might have. “There were so many times in the past when I asked to be able to work remotely more often and was denied, which is one reason why I went freelance,” said Elly Belle, a full-time freelance journalist and writer who has several disabilities, including autism, a heart condition, ADHD, and C-PTSD. “For me, a regular 9-5 schedule that requires me to be in an office every single day doesn't work.”Emily Ladau, author of Demystifying Disability and a disability rights activist, also became self-employed mostly due to her Larsen syndrome. Some of the flexibility she values has been lost to the nature of the pandemic and its stay-at-home orders, and she misses traveling for work. “As soon as the pandemic hit, I realized that I just liked the feeling of knowing I had the option of leaving my house,” she said. “It’s not just remote work that I value, it’s flexible work that I value and I don’t really have that now in terms of location.”

Looked at in this way, Davies—while he may disagree with some of their conclusions—ends up playing the role, advertently or inadvertently, of a radical conservative theoretician who helps academically legitimize and justify their disabilist and anti-welfare dispositions.

After all, as the right has learned from their culture war against trans people, one of the best ways to undermine recognition, support, and rights for marginalized people is to cast doubt on the validity of their identities.

Personally, I agree that medications are by themselves often an inadequate and overly individualistic solution to systemic problems, and they are even harmful for some of us.

Many conservatives, or even fascists, also dislike neoliberalism. Neoliberalism is not, after all, a classic British conservative ideology but something radically libertarian. It is as destructive for conservative institutions like the church and the nuclear family as it is for socialist achievements such as social medicine or welfare. Hence, many on the right and far right are as against neoliberalism as many of those of us on the left are.

But was Fordism really that good? It certainly wasn’t for neurodivergent people, as I have detailed elsewhere. In fact, this was an era where neuronormative domination and the coercive power of psychologists and therapists grew over neurodivergent people. Neither was it particularly good for disabled people more generally (who had far less robust rights), women (often consigned to unpaid housework), queer people (who were criminalized and pathologized), or people of color (who were more often locked out of work due to arguably more overt racial injustice). Perhaps, it was better for the white, abled, cis-het men, in certain ways, since many were better paid than now, had better working conditions, and also were more privileged in relation to more marginalized groups. So it is easy to see why some people long to go back to this period. But for those of us who do not fit into that demographic, this will not be our golden age.

I also support (progressive or left variants of) psychiatric abolitionism, which for me focuses not on cutting access to medications but rather on cultivating mutual aid, community-based alternatives, anti-carceral supports, and, I hope in the longer term, worker-owned pharmaceutical cooperatives, that could one day make existing institutions obsolete. These approaches have nothing to do with restoring some purported golden age or teaching the masses how to embrace suffering, but instead aim towards frameworks that genuinely prioritize the wants and needs of those of us who are disabled, distressed, or unwell.

The Colorado task force plans to suggest clarifying the definitions of abuse and neglect under the state's mandatory reporting statute. Mandatory reporters should not "make a report solely due to a family/child's race, class or gender," nor because of inadequate housing, furnishings, income or clothing. Also, there should not be a report based solely on the "disability status of the minor, parent or guardian," according to the group's draft recommendation.

"Mandatory reporting disproportionately impacts families of color" — initiating contact between child protection services and families who routinely do not present concerns of abuse or neglect, the task force said.

The task force says it is analyzing whether better screening might mitigate "the disproportionate impact of mandatory reporting on under-resourced communities, communities of color and persons with disabilities."

The teachers and medical providers making the reports frequently suggested that the county human services agency could assist Lovelace's family. But the investigations that followed were invasive and traumatic.

"Our biggest looming fear is, 'Are you going to take our children away?'" says Lovelace, who is an advocate for the Colorado Cross-Disability Coalition, an organization that lobbies for the civil rights of people with disabilities. "We're afraid to ask for help. It's keeping us from entering services because of the fear of child welfare."

an alternative phone number, or "warmline," for cases in which callers believe a family needs material assistance, rather than surveillance.

New York state introduced a warmline to help connect families with resources like housing and child care.

"Mandatory reporting is another form of keeping us policed and surveillanced by whiteness," says Jihad, who as a child was taken from the care of a loving parent and placed temporarily into the foster system. Reform isn't enough, she says. "We know what we need, and it's usually funding and resources."

None of the caseworkers who visited the family ever mentioned the waiver, Lovelace says. "I really think they didn't know about it."

‘Crip time for me is reflected in the ways that many normative milestones in my life were delayed or missed out altogether. The opportunity to ‘bend’ time meant that I was able to go to university later in life and graduate with a PhD. Crip time aligns with the flexibility associated with being self-employed and allows me to cultivate my work around my interests.’ (Team member, Cripping Breath)

Our relationships to such technologies, then, contest discourses that define breathing as the ultimate independent and autonomous act (see Abrams et al. 2021).

In contexts of ableism, which ‘denote broad cultural logics of autonomy, self-sufficiency and independence’ (Whitney et al. 2019: 1478), to breathe by yourself is to be fully human. Yet one only has to look to posthuman disability studies to counter such fallacies, and learn how interdependencies with a network of technologies, non-human animals, and other entities enable more expansive, relational and nomadic engagements with the world (Whitney et al. 2019).

In Cripping Breath, rest, recuperation and recovery time considers how we are thinking about ethical pacing and ways of working together.

We aim to challenge breathing as an autonomous and natural function that is framed as central to our humanness and ability to live, the absence of which brings us close to death (see Solomon 2020).

‘Crip time is flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen on time, recognising how expectations of “how long things take” are based on very particular minds and bodies….’

Respiratory failure, and other forms of progressive respiratory impairment, bring about a strange relationship to time. They are quite often clocks that cannot be stopped and which clash with neoliberal-able timelines (see Goodley and Lawthom 2019).

Walker said the real story of the term “neurodiversity,” wherein a community coined the word, is “inspiring” and one that people should know.